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In response to Mackenzie's statement about us needing a "new paradigm" in PD therapy, I just wanted to give my opinion. I am feel that the reason there hasn't been more effort to find something other than levadopa (aka dopaminergic) therapy is because it works too darn well! How many medications show almost instantaneous results? Not many, I assure you. I imagine that the 40 years with nothing but dopamine "boosters" strongly correlates to the fact that carbidopa/levadopa (Sinemet) is inexpensive to manufacture, has an approved generic formula, and works well for thousands of patients for a number of years. Many patients are happy (for a while), doctors are happy (a quick in and out patient), and insurance companies are happy ($$$$). So why be in a hurry to change anything? That's why we (the patient) need to speak up. As a voluntary member of the Parkinson's Pipeline Project, a group of patients have been following new and potential treatments for PD for several years. And we found something that appears to work almost like dopamine replacement, but without the horrible side effects. The treatment is a natural substance the body produces called GDNF (glial cell-derived neurotrophic factor). A company known as Amgen holds the patented synthetic formula. It is a known fact that cell regeneration is greatly increased when bathed in GDNF. Go to PubMed and do a search for GDNF or visit the Pipeline site (see www.pdpipeline.org). The only drawback (so far) is that GDNF must be delivered via a catheter system that must be surgically implanted in your head, but the procedure is relatively simple - not nearly as invasive as DBS. In its clinical trials, Phase I patients showed remarkable results. Some who were wheelchair bound were up and riding bikes, and others were able to return to work. And many have maintained this improvement even years after the trials were stopped. Yes, Amgen halted the trials in Phase II. They claimed for "safety reasons" when concomitant monkey studies showed brain lesions and a few patients developed antibodies. The facts are that the patients with antibodies were asymptomatic, and the monkeys were receiving GDNF doses that were much greater than those of the patients. In fact, some researchers are saying that it was the abrupt withdrawal of GDNF that caused the lesions. Others are challenging the study design saying the results are invalid due to too low a number of participants in Phase II. This story has been told publicly (here several times) and has divided several professionals' opinions about the validity of the "safety" issues of GDNF. Diane Sawyer followed a patient's story about the halting of the trial on her morning show, 60 Minutes on CBS devoted an entire segment on it, and researchers actually participating in the trials have argued for the reinstatement of the GDNF trials, or at least let those patients for whom it w as working have GDNF treatment reinstated. So why would a company not want to find a better treatment for PD? I am of the opinion that this decision was a financial decision. The trials were halted at the same time the Vioxx issue hit the pharmaceutical market. And there are only an estimated 1.5 (more or less) Parkinson's patients, not a big market like cancer or heart disease. But it works, and although there are similar studies using other neurotrophic factors (Neuturin, for example), they are in the early phases and GDNF trials could either repeat Phase II or go on to Phase II, making for a much faster availability of treatment that works! And, like many of you and having had PD for 12 years, my time is ticking away fast! WE NEED YOU IN THIS BATTLE! Go to the Pipeline Project website (see above) or reply here if you would like to help Peggy ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn